What do I do now?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

What do I do now?

Postby SilverSpringMom » Sun Aug 18, 2013 6:03 am

Hi! I really need help. Any advice you can offer is greatly appreciated.
I am a 41 year old African American woman. A divorced mom of two. I am a public school teacher so my job is mentally demanding and physically active. I love being out and about.
So, what I am going through is hitting me hard.
A little over a year ago, I was diagnosed with parvovirus after suddenly developing severe fatigue and crippling pain in my fingers and toes. I was told that this was a temporary illness and symptoms would fade, then vanish over the next couple weeks. When they abated only slightly, I was told sometimes it takes a couple months.
Sure enough, the parvo did improve, but then I developed ideopathic gastroparesis. I lost over 30 lbs, was fatigued, and weak. Soon after beginning Reglan, I began feeling numbness and tingling in my hands. My dosage was dramatically reduced, but this sensation spread to my forearms, then to my feet and lower legs. I drop things. I stumble.
Meanwhile, whenever I woke up during the night, I felt shaky. My fasting blood sugar was determined to be low normal. My thyroid is low normal.
When I wake up in the morning, I have to take 20-30 minutes on average to get my body to feel normal enough to safely get out of bed and move around. If I try too soon, I wobble and sometimes fall. I used to be a morning person who could thrive on 5 hours of sleep. Now I dread going to bed at night, no matter how exhausted I am because I know I am in for hours of tortured sleep. I bought a feather nest for the bed and still can't get comfortable. I can not lie in any position longer than 30 minutes before my muscles feel sore and the tingling in my arms and legs grows unbearable.
My primary care physician argues that the symptoms are all side effects of the medication, but she refuses to do any testing beyond looking at my blood sugar and thyroid.
This is all destroying my quality of life. I moved out of my house and into a rented apartment. I dropped out of graduate school. I took a 12 week leave of absence from work. I halted a romance with a really wonderful gentleman. My elderly parents stepped in to help with childcare, household chores, and paying bills.
A family member pointed out that our family has a number of autoimmune disorders. But RA was ruled out when I was tested for the parvovirus and my doctor refuses to test for anything else. She also is annoyed when I mentioned that I urinate 30 or more times a day, including waking at least 4 times at night.
I return to work tomorrow and I feel terrified that I will be unable to make it through the school day due to pain, fatigue, and loss of strength in my hands.
Several people have asked if I have MS. Does this sound like it? If so, what can I do?
Thanks!
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Re: What do I do now?

Postby SilverSpringMom » Sun Aug 18, 2013 6:11 am

I should add that I tested negative for Lyme disease when they tested me for the parvo. Also, a ENT tested me for something after I developed a bad double ear infection and my doctor thought my lack of balance was from that. My vision is blurry although I have a brand new prescription.
TIA
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Re: What do I do now?

Postby jimmylegs » Sun Aug 18, 2013 6:37 am

welcome to the forum :) sorry to hear you're having a hard time

it's hard for any of us to say what you might have, since symptoms can vary so widely.

I can help with investigating potential nutritional solutions if you are interested. those are applicable regardless of diagnosis. there are some pretty common nutritional problems that can manifest in a wide variety of ways depending on the individual. ms has a distinct nutritional profile. so does health. if you have the capacity to pursue private blood testing, we can work on it if you choose.

I have tons of info on ways to go forward with diet first and supplements later if testing shows they are warranted.

more detailed info: regimens-f22/topic2489.html
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Re: What do I do now?

Postby SilverSpringMom » Sun Aug 18, 2013 8:03 am

Thanks! I would be interested in learning more. I know that my nutrition is an issue. Because of the gastroparesis, my diet is very limited. I tried a liquid vitamin, but it increased my nausea to the point that I couldn't keep the solution down.
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Re: What do I do now?

Postby bartman » Sun Aug 18, 2013 8:23 am

A negative Lyme test does not mean you don't have it. Did she test for co-infections Bartonella or Babesia? You need to see a Lyme doctor immediately. Check your PM, I will email you a doctor close by.
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Re: What do I do now?

Postby jimmylegs » Sun Aug 18, 2013 8:47 am

all right well first of all can you give me some detail on a typical diet over about three days or so? all intakes from food, fluids, meds etc. for example are you still on reglan? anything else? anyway. you can private message me if you don't feel like sharing publicly.
a review of that info will help point up the best course of action for testing.

if you're in the states, here is a potential resource you can consider using to order private nutrient testing http://www.lef.org/Vitamins-Supplements ... -Tests.htm
we will probably be able to narrow the list of relevant tests down to two or three to get a preliminary idea of your status.

in the short term, there are a few options you might be able to follow up on, for taking in nutrients via skin, eg a topical solution or a bath, 'medicated' creams, or via mucous membranes (ie sublingual).

if you have a read of that 'detailed info' link above, you'll be able to get a sense of where I am going overall with any questions I ask.
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Re: What do I do now?

Postby CaliReader » Sun Aug 18, 2013 9:02 am

Hi,

Very sorry to hear you're going through all this.

About your symptoms. Some help is available without rx. I've read that more than 80 percent of people with MS have trouble sleeping. Melatonin has improved my life and has little or no risks or side effects.

The pain you have at night could be spastic muscle cramping. If it is, magnesium might help some. It helps me.

If the pain is nerve pain than you have to decide re the costs and benefits of drugs for nerve pain. Usual pain meds won't help.

About seeing a doctor. I would get a second opinion from a different primary care doc and ask for referrals. Going to the bathroom 30 times a day is not normal and could be MS. Dropping things, stumbling and falling for no reason could be MS.

You won't know if it is MS without at least one MRI. I would start with a second opinion from a primary doc, but if that doesn't get you testing, you could go ask an Emergency Room for help the next time you fall down...

The MS diagnosis process is miserable. I was told I was depressed and it was all in my head. I was referred to a psychologist on the theory that I had conversion disorder. After some time, the psych said that if my symptoms were mental, they would have improved. Meanwhile, my MRI showed lesions.

I hope this helps.
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Re: What do I do now?

Postby lyndacarol » Sun Aug 18, 2013 9:14 am

SilverSpringMom wrote:A little over a year ago, I was diagnosed with parvovirus after suddenly developing severe fatigue and crippling pain in my fingers and toes. I was told that this was a temporary illness and symptoms would fade, then vanish over the next couple weeks. When they abated only slightly, I was told sometimes it takes a couple months.
Sure enough, the parvo did improve [MS usually begins with the relapsing-remitting form – symptoms appear and then improve], but then I developed ideopathic gastroparesis.
...My fasting blood sugar was determined to be low normal [Insulin lowers blood sugar; I suspect excess insulin lowers yours to the low normal level.].
...I wobble and sometimes fall [Excess insulin thickens and stiffens muscles – could this be what has happened?].
...I mentioned that I urinate 30 or more times a day, including waking at least 4 times at night [Excess insulin affects smooth muscles as well as skeletal muscles. The detrusor muscles and sphincter muscles of the urinary bladder are smooth muscles. The insulin hormone is also VERY irritating and can be irritating the inside of your bladder].
I return to work tomorrow and I feel terrified that I will be unable to make it through the school day due to pain, fatigue, and loss of strength in my hands [Muscles again?].

Several people have asked if I have MS. Does this sound like it? If so, what can I do?


Welcome to ThisIsMS, SilverSpringMom. We are glad you found us; we are willing to share our experiences and our unique ideas on MS; we will try to answer your questions, when asked. The cause of MS is unknown; there is no accepted, 100% effective treatment for it.

Your history and symptoms COULD be MS, but COULD be so many other conditions as well. Your primary care physician has made a good start in testing blood sugar, thyroid, and RA. Since my particular suspicion focuses on excess insulin as the cause of most of my symptoms, I suggest that you request a "fasting blood insulin test" (this is not the same as a blood sugar test); the optimal result is 3 UU/ML or lower – mine has never been lower than 9).

There is no medication to lower an elevated insulin level. Diet is the only accepted method.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: What do I do now?

Postby jimmylegs » Sun Aug 18, 2013 9:47 am

... with zinc and magnesium being two of the significant dietary players when it comes to fasting insulin.
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Re: What do I do now?

Postby Ash3 » Sun Aug 18, 2013 1:05 pm

Take charge and go to another doctor and have all of your medical information, records with you. Even your state department health center can help you. You have a wonderful support system and you need to find out what is going on. I had to do something similar to you so I fully understand. We all are here to support you. Good Luck. Ash3
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Re: What do I do now?

Postby euphoniaa » Sun Aug 18, 2013 3:37 pm

SilverSpringMom wrote:Sure enough, the parvo did improve, but then I developed ideopathic gastroparesis. I lost over 30 lbs, was fatigued, and weak. Soon after beginning Reglan, I began feeling numbness and tingling in my hands. My dosage was dramatically reduced, but this sensation spread to my forearms, then to my feet and lower legs. I drop things. I stumble.

My primary care physician argues that the symptoms are all side effects of the medication, but she refuses to do any testing beyond looking at my blood sugar and thyroid.

Several people have asked if I have MS. Does this sound like it? If so, what can I do?
Thanks!


Hi SilverSpringMom, and welcome! I'm sorry you're having so many weird symptoms and yes, a few might sound a little bit MS-y, but the fact is, MS affects each of us in such unique ways, and all neurological diseases share similar symptoms. That's why symptoms alone just can't identify it. Plus, many (or all) of us suffer from additional medical issues.

In my case, there's no way I can positively blame a single one of my many weirdnesses on MS due to other conditions. Even my neuro agrees on that.

But when I noticed your doctor blames Reglan, I had to bump an old thread of mine. (See it here: general-discussion-f1/topic15990.html ) If your doc just shrugs that off, please go to another doctor for a second opinion. You may have MS, you may not have MS, but someone should certainly be doing some further testing!

Best wishes to you in finding both answers and solutions to your problems! :smile:
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: What do I do now?

Postby SilverSpringMom » Mon Aug 19, 2013 12:23 pm

Thanks everyone! What a wealth of information and support. My symptoms are much more pronounced today and I would really be despairing if I thought that I had no leads. I am printing out these messages to take with me when I see my doctor. Sounds like some new tests are definitely in order, but meanwhile I will look at the nutritional approach.
Thanks again!
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Re: What do I do now?

Postby Loriyas » Mon Aug 19, 2013 1:00 pm

I may have missed it but have you had an MRI?
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Re: What do I do now?

Postby SilverSpringMom » Wed Aug 21, 2013 4:33 pm

My PCP finally got concerned enough to send me to a neurologist tomorrow. I'm hopeful that an MRI and other tests will be ordered.
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Re: What do I do now?

Postby SilverSpringMom » Thu Aug 22, 2013 4:25 pm

My appointment went well and I was given many possibilities to be tested for. B12 deficiency was mentioned as a potential cause, but I am also having an MRI tomorrow.
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